To diagnose or not to diagnose, that is the question

[Sunnyjac]

So I’m once again looking to you wonderful people for advice.

My DD13 was put on the waiting list for an ADHD assessment in March last year, and the ASD one shortly thereafter. We were sent some paperwork for ADHD in December which I completed and sent back. In January last year we had a private assessment that said she very likely has ADHD and gave recommendations for adjustments at school to support her. The school put in for the ADHD assessment and recommended we do the one for ASD.

Today I got a letter from the ADHD assessors explaining changes to the process. In a nutshell they will prioritise looked after children, those in the youth offending system and those under CAHMS. Everyone else will stay on the list but it’s unlikely they will ever get to the top.

I think our options are:

• Leave her on the list and hope she gets to the top before she turns 18
• Go private again

So my question to you is what is the benefit of her being diagnosed? What will change, what help will we get if she is, how will it help her or us?

My first thought was to go private, DH immediately asked what will that give us and her other than a label?

What wisdom can you share?

Go private. I’ve just been through this with my dd. Younger brother has adhd (a mix of both) I thought dd had anxiety/ depression and has been through CAMHS etc, but on waiting list to see the psychiatrist. Problem is her GCSE’s start in less than a month and I/she couldn’t wait that long. Switch to private, several hundreds of pounds and a 2 week wait - she’s inattentive adhd and now on meds 2 weeks in. The difference is already showing, just working on tritiation. Wish we’d done it sooner and not left it so long - but I really didn’t expect that diagnosis for her.
You just don’t know how long you’ll have to wait and she’s only just at the start of puberty really - things may or may not be difficult for her, but if you can go private, I would recommend it.

If going private is an option then I'd do it. My DS has just been diagnosed with inattentive ADHD and to say his exams were a struggle is such an understatement it's laughable. He's bright and did eventually get good A'Levels but the effort it took him was gargantuan.

DD is just going through the ASD Pathway and they've agreed that she likely has Dyslexia and ADHD. She did cope in High School, just, until we got to Y11 and things have well and truly gone wrong.

I'd like to say that I wished I'd got her assessed her earlier, but I tried, for years and nobody would listen because she used to be such a smiley well-behaved child DF school, I've even had SENCO laugh at me when I've said I think she has ASD. One meeting with Community Paediatrics abc they've said that they think she has severe ASD traits.

So in short, if you can, get her assessed now long before Y11 starts and the pressure ramps up.

Thanks both, helpful to read your stories. My concern is that the pressure of GCSEs could ramp up the problems. She’s just about coping at the moment (year 8). We’re pretty sure she has inattentive type and I’m convinced she has ASD too. What’s the difference you see from the meds and are they accessible without a diagnosis?

I'm not sure if ADHD meds are available without a diagnosis but I could be very wrong, all of this is a bit new for me.

DS has decided not to try them yet, I'm trying to persuade him though so I can't help you with the difference that meds might make.

Definitely not accessible without a diagnosis as they are “controlled drugs” - but a diagnosis via the nhs could be at least a couple of years as you have to go through many channels and everything just takes so long.

Again thank you. Useful to know about the meds. It’s such a difficult decision whether to go ahead. I want to do the best thing for her but what if I pursue this and then nothing changes? Or worse, I’m wrong and she doesn’t have any of these conditions and is left wondering what next.